my mum has psp, only properly diagnosed this yr but has been ongoing since 2017 if not before. Today she has fallen and cut the back of her head, paramedics have been out and she refused to go to the hospital. She lives alone and has said many times that’s where she wants to stay but I don’t know if I can keep that promise to her anymore. She has carers come in 4 times a day. She won’t let them help with personal care she is up and sort of showered, we know she can’t do it properly, and dressed before the carers are even there in the morning. She sees nothing wrong with this, her risky behaviour is getting worse. I thought everything had been quite stable but now see the change the last few weeks hasn’t been physical.
Im at her house every day but I have young children and can’t be there from 2.30pm onwards she lives alone in a bungalow. This is the first time I’ve really questioned if what I’m doing is good enough.
sorry for rambling on, I don’t feel like I have anyone to talk to about this.
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Hi, It is worth considering if Apathy plays a part in how she is, a lot of PSP sufferers develop Apathy and if this is the case she may not realise that what she is doing is not good enough or even dangerous.My wife is very similar and I have found that being strong and insisting she does what is best for her works; due to the Apathy she does not take offence to this in the way she would have done in the past. This may also mean asking the carers to insist they do their job even if it means undressing her and starting again.
In the long term she will need constant supervision as the disease progresses, I would start having those conversations now to prepare her.
i would say now that your Mum is falling she should not be on her own. My father was diagnosed only this year officially but had an incorrect diagnosis in 2018. His first fall was April this year, and is now in resthome care because he in the main, he needed constant supervision and could not get shower or toilet himself. Your Mum and minimum sounds like she needs constant supervision. If she is refusing help, you may have to accept that but she will likely have a serious fall and her choices for support may be limited. Have you considered resthome care? It sounds like you have done everything available to you.
Reading this is oh so familiar! My mum was finally diagnosed with PSP last year after me repeatedly telling her GP something was wrong and him taking no notice!
My dad died in 2020 so since then mum had been on her own in a ground floor apartment, her falls were increasing and she had carers go in 4 times a day but they were barely in 5 mins as she would tell them she didn’t need anything doing - then when they left ring either myself or sister!
She wouldn’t let them shower her or dress her but was at the stage where she could manage herself so again she relied on me.
I was going round every day after work and spending a lot of the weekend there, I felt guilty that I wasn’t at home for my own family( luckily they were older) when I was home I felt guilty mum was on her own it was a no win situation.
Her falls were increasing she was always patched up after her latest fall but like your mum wouldn’t entertain the idea of more help or moving somewhere that she could be taken care of. She did have a lifeline and used that daily when she fell and couldn’t get up.
The decision to accept she needed more supervision was thankfully taken from us after a fall during the night led to her being laid on her bedroom floor all night( she had removed her lifeline and couldn’t reach the phone). She was found by the morning cater who rang for an ambulance, she was taken to hospital where she was found to be in acute kidney failure and was transferred to a unit where they were querying dialysis but luckily she recovered. It was at this point that she lost her mobility, the leg she had been laid on became useless there was no fracture but she just lost the ability to use it. The doctor looking after her asked for an appt with me and asked if I had noticed any changes in mum - I was relieved someone was finally listening to me! It was then that she was diagnosed with PSP and I was advised to start looking for a care home as she would require 24 hour supervision.
I never imagined I would put any of my parents in a care home but he explained the nature of the disease and how it progresses, and that she would need 24 hour round the clock care.
Explaining this to mum wasn’t easy, she didn’t accept what I was saying and kept saying she could move in with me get carers in more. She still makes me feel awful for making the decision but I know the right decision was made- she is now totally immobile and needs to be hoisted, has almost lost her speech and chokes often.
None of us want to admit parents to a care home but I have got more quality time with her now. My sister and myself go in every day between us and try to make the best of it, we have got the mother/daughter relationship back rather than being full time carers. She has accepted it now but I still get days where she asks to go home which isn’t easy. Mum is quite difficult to look after but always has been so the PSP has exacerbated that no one can do anything right, she’s impatient and is use to ringing us and us rushing round when she was in her flat, she now has to learn to be patient as the carers have other residents to look after.
It’s not home and she still rings me all hours asking me to go round to the home to sort something out, but I now have the piece of mind knowing I can sleep on a night knowing she is safe and if I’m needed for anything the home would ring. It’s only a small home and feels very welcoming I have got to know the carers well - my only gripe is that they all don’t seem to understand PSP. The only information I’ve got about it is from the PSPA, we had no follow up once she was discharged from hospital, no Parkinson’s nurse the only input is from the speech therapist.
I wish you well with your decision just keep in mind that you are doing it for the good of your mum, it’s not easy and like I’ve said the guilt of doing it weighs heavy with me but something had to give I couldn’t carry on as I was and things were getting worse.
Message anytime as I fully understand your predicament- hope this helps
I could have written every word of what you have said myself! The guilt still lays heavily as when Mum was fit and able she made me promise I would never let her get moved into a home. Unfortunately circumstances change beyond any of your expectations, and Mum had a nasty fall -she broke her neck so like you the decision was taken out of my hands. We all like to think that we can cope with juggling your own family, working, and with spending every afternoon at your Mums, and I did this quite successfully until the falls and demands were happening at 2am several times a week. Every night I was going to bed dreading the phone ringing and this impacted on sleep quality terribly, and this lowered the level of patience I had with Mum which made me feel even worse!Sadly my Mum died earlier this year. I know I did everything I could to keep her safe but the guilt sometimes comes across me and I ask myself if I could have done anything differently. I know the answer is probably no, but it doesn't make me feel any better. PSP is a very cruel illness. Be gentle on yourself. It takes courage to admit to yourself that you are struggling to cope.
Oh so familiar, my wife (UK Scotland) in comon with so many with PSP was not able to assess risk. In her head she felt she could do everything she used to do - hence the accidents.Your Mum needs someone in attendance all the time, usually a family member who can keep the visiting carers (may not be the same ones every time) up to the mark, as I had to do. Night monitoring will be so vital.Contact your social worker to discuss matters. Without a family member available a carehome may have to be the answer. Talk to the PSP Association helpline, they can furnish the care home with advice on careing for a PSP patient. All my very best wishes
Thankyou for all the replies it puts my mind at ease somewhat of what needs to happen.
My mum has been falling since 2016ish that’s how all of this started, she was walking my child to school as she liked to help out and fell. She thought she’d tripped over something but it happened again and after a while she decided to see the gp (she hates drs) he referred her and suspected Parkinson’s in 2017. I think we have been quite lucky with the neurology community team, the head nurse very quickly said she thought this was psp not Parkinson’s and the same was said by a physio my mum saw. Through the pandemic they have actively been trying to get mum properly diagnosed but it took up until earlier this yr for that to happen after being told it wasn’t progressing quick enough by her consultant so he didnt want to diagnose it.
Mum regularly falls somehow not having any broken bones up to now. Her speech is quiet, she coughs a lot on her saliva and fluids, this is being treated by speech therapist from the same community neurology team. We have our local hospices involved. I know what is coming and I know it will be soon.
Reading your replies makes me actually feel like I’ve failed her by keeping her at home for so long when all this has been happening. I’ve been thinking that although she doesn’t let the carers with personal care they do prepare food and sit with her while she eats, again we are lucky that she has mostly the same carers and especially one who has just been incredible with learning about psp and speaking up when any of his colleagues are not doing their job to certain standards. He is now at mums 6 days a wk and I know she is safe with him. A huge worry for me is having carers who do not understand psp all over again. It’s exhausting explaining it to people now I feel like I’m talking to a brick wall. This includes gps and nurses. No one seems interested.
Mums wishes was to stay at home and I guess I have been focusing on that and thinking, as the drs at the hospices have been saying they can make that happen I’ve gone along with it now I’m not too sure. I will be making phone calls, I’m sure who to first. If hospice is involved would that be the best bet? She doesn’t have a main social worker as far as I’m aware, the only time we’ve heard from one was setting up the care plan.
I’ve just realised how long my reply is 🙈
There’s so much going through my mind I honestly feel quite lost at the moment
You have not failed your mum by keeping her at home. PSP is a journey and everyone's is different. Everything has a dynamic - I left my job, and moved in to help Mum care for my dad when he came out of hospital thinking I could settle him back in and establish a new routine for mum. It was totally unrealistic, but I have no regrets and would do it all again. He is in a home now and I know from the bottom of my heart thats the place for him even though he hates it. It did have the effect of him having these unrealistic expectations and he often asks even today, why he has to be in a home, why cant I move in permanently, why the neighbours cant help and so on. Because i know is so issues so well, I can be more of an advocate for him in the home. The home has never had anyone with PSP before - Dad is their first exposure, so some things are frustrating, but its not a one carer to one patient relationship but that said when he falls (and he does) he is safer there than at home. There are night staff that are paid to manage Dad's toileting at night (he is a frequent night-time) guy which was just impossible for Mum to do. I do not sugar coat anything - the home is a bit depressing but its part of his journey and as a family we will we by his side every step of the way and thats the comforting part.
You have not failed your mum. We all do the best we can in very difficult circumstances In my case I was trying to juggle work, kids and mum and feeling that I wasn’t doing anything very well. I know it is possible to keep people at home but I can only tell you about our experience.
I would suggest having some respite care, this can be partially funded through the social worker. Mum had two weeks in a home so I could go on holiday. It wasn’t a good experience but after being back home about a month and faced with trying to increase carer visits, she actually chose to go into a home instead. The respite experience gave us pointers of things to avoid and things to look for and we were able to find a home better suited to mum. It isn’t perfect, but it’s the best things can be. Let’s face it, things weren’t perfect even when she was at home.
Whilst I never thought I would put mum in a home, I am still very involved in her care.
My Mum like yours very much wanted to stay in her own home. We moved her to be closer to us to a sheltered housing complex that had a member of staff on duty 24/7. This worked really well as a "standard" alarm system wouldn't have worked because though she could press the buzzer she couldn't talk loud enough for them to hear. Having staff on site meant they could go & investigate immediately if she needed them.
I was able to give up work and visited everyday. I tried to take her out in her wheelchair most days as she loved fresh air but it also tired her out, which meant she was less likely to try and get up when she was on her own & slept better. She had carers 4 times a day like your Mum. Could you arrange for the carers to come earlier, before your Mum gets herself up. We had to bring forward the time of Mum's first visit because she didn't like waiting for them.
Everyone's journey here is different & unique but think carefully before putting Mum in a home & see if you can do a trial stay first. Mum had 6 months in a nursing home recovering from a fall. During that time she had several minor falls & two which required hospital treatment, plus an undiagnosed UTI. She was very unhappy and we felt no safer or getting no better care than in her own apartment, something the social worker agreed with us on and so she moved back home, where she was able to stay until the end.
There is actually a place like this just around the corner from where we all live. I’m going to give them a ring Monday morning. Also going to look at getting more care at home, I used to work for the care company my mum has and I know they do sit ins as I used to do them. I’m just hoping my mum won’t refuse it all. She often says she feels like she’s putting too much on me then will phone me for the littlest things that her carer could of done.
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